CARLI’S CHOICE
Publication Date:January 17, 2010 Page:1
Turning 18 is a rite of passage, but for Carli Slack, the milestone has life-or-death significance.
By MICHELLE BEARDEN

TAMPA - In a fairy tale beloved by little girls, Cinderella transforms from a maid to a beautiful princess at the palace ball.
On Saturday, Carli Slack had her Cinderella moment.
She arrived at the party in a royal blue dress and a pink cardboard tiara. It didn't matter that she was wheeled into the room lying in a hospital bed. A sign attached to the headboard announced: "Queen Carli's Coach."
Two years ago, the Tampa teenager was looking forward to her first prom at PlantHigh School. But that was not to be. Now she rarely sees the outside of her room in the pediatric intensive care unit at Tampa GeneralHospital.
This day, though, was special. She turned 18.
"Carli can stay at this party for as long as she likes," one of her nurses said.
Some 50 friends, family members and hospital staff welcomed her with a rousing chorus of "Happy Birthday," first in English, then in Spanish. She can't eat solid food, so they devoured a dessert made of red, blue and green gelatin.
This passage from child to adult is especially significant. Her future is uncertain. Carli has nearly died a half-dozen times in the past year and a half. Doctors offer little, if any, hope that she will ever leave the hospital, where she is kept alive by rigorous medical care and parents who are always at her side.
Since July 2008, they have made the decisions on every medical measure taken regarding their daughter's life. Although it has been a painful journey, they are steadfast in their resolve that Carli be given every chance to survive.
But now that she's 18, it's Carli's choice.
What will she decide?
Before her baffling, inexorable illness, Carli lived in a world of possibilities.
Petite and 16, she had a dazzling bright-white smile that made people feel good just to be around her. At PlantHigh School, where she was on the honor roll, she attracted friends like a magnet with her outgoing and good-natured manner. She cleverly sated her addiction to spicy Asian food by getting her first job at Pei Wei on South
Dale Mabry Highway. Intrigued with how the mind works, she thought she might study psychology when she went to college.
Alisha Rivera, 19, loved how Carli would roll her eyes and say, “That’s wack!” when she heard some outlandish bit of news or gossip. She was given to fits of laughter — a “real giggle box,” Rivera says. At home in South Tampa, second born in a close-knit family of four siblings, Carli was the live wire, the mischievous
one.
“Loud, crazy and a lot of fun,” says older sister Cassandra, 19, a freshman at North CarolinaStateUniversity. “You can count on Carli to be honest and outspoken.” When Cassandra graduated from Plant in May, her grandmother’s gift was a Caribbean cruise. She hasn’t taken it yet. “I’m waiting until Carli can go with me,” she says.
Doctors aren’t so optimistic. For 17 months, Carli’s world has been a hospital room — first at St. Joseph’s and, since June, the pediatric care unit at Tampa General. Except for a few hours-long outings, she has spent every night tethered by drains and tubing to monitors that flash numbers and pump medications.
She has had three major surgeries and dozens of lesser ones. Six times, her parents, Kevin and Edith, have been told death was imminent. Six times, she has come back. Strong in their Christian faith, they believe it is God’s will that Carli is still alive.
“He has a mission for us, and for Carli, that we don’t fully understand yet,” says Kevin, 42. Deadly fungus stalked her The cancer that began this downward spiral is in remission. But an unstoppable fungus she contracted while undergoing chemotherapy — a rare disease called mucormycosis — is eating away at her organs. It has left her with a gaping hole in her abdomen and multiple fistulas in her stomach.
She depends on twice-aweek transfusions of blood products to survive and constant medical care. Almost daily, she spontaneously bleeds internally. Last week, hiccups triggered a bout. Her gall bladder is gone and her intestines no longer function. Her liver and kidneys are failing. A transplant is out of the question; her system could not tolerate the drugs needed to ward off rejection.
Ric Weibley, a pediatric intensive care physician treating Carli, says mucormycosis is generally considered a deadly infection. “Carli has lived longer than most people because of all the care she’s gotten. But we’re in the business of curing people, and something like this makes you feel inadequate,” he says. “At some point, you have to
accept the reality that you can’t save everybody and that you can only help them live as well as possible.”
A father of two, he understands Kevin’s and Edith’s hope, their encouraged response to any sign of improvement,
no matter how small. It is unnatural to outlive your children. Knowing when and how to say goodbye is a difficult
process that takes a lot of soul searching, he says. And some parents will never get there. “They will always choose any life over no life,” the physician says. Some doctors have been more forceful with the Slacks, urging them to let go.
They cite Carli’s pain and the futility of providing blood products and expensive medical treatment. Neither Edith nor Kevin has insurance — Edith lost her job at an insurance agency and Kevin is a contract employee with The Sylvia Thomas Center, an adoption services agency.
They can’t begin to calculate the cost of keeping Carli alive. On the verge of death Early on, the Slacks approved
a “do not resuscitate” order. At the last moment, as she was turning blue and gasping for breath before their eyes, they rescinded and she was put on a respirator.
Not only did Carli recover, she rallied, surprising everyone. She could be taken out in a wheelchair. She went to Cassandra’s graduation. She talked of finishing school and going to college when she got out of the hospital.
“We’ve seen many miracles,” says Edith, 41. “That was just one of them. I am not going to stand by and just watch my daughter die because the doctors say there is no hope. I will do whatever I can to keep Carli with us, and leave the final decision with God.”
Although Carli’s condition has worsened, the Slacks concentrate on the little victories: the return of visits by a homebound teacher for tutoring, the radiant joy in Carli’s face when she got a 32-inch television for her room at Christmas, the night she rattled off names of her future children to the attending nurse.
Any mention of her 5-yearold cousin Kamryn makes her smile.
On good days, she challenges her dad to “Super Mario” matches on Nintendo. She likes to get manicures. But some days, depression, pain and the hopelessness of her situation overwhelm her, and she cries out for it to be over. Her friends are moving on with their lives — why can’t she?
Her parents hold constant vigil. One or the other, and sometimes both, are always by her side. Younger sister Cayla, 11, and brother Christian, 15, bring their homework and camp in a corner of the fifthfloor room that overlooks TampaBay. Edith bathes Carli and keeps her skin soft with medicated lotions. In a year and a half, Carli has never had a bedsore.
All that closeness sometimes leads to sparring between mother and daughter.
“She wants her space,” Edith says with a smile. “No teenager wants her mom around so much.”
When Carli wants to tune out, she burrows under her pink Snuggie and pulls down an eye mask.
Prayers from the world
In the overnight hours, with the whirl of a noisy air conditioner muffling the sounds of the pediatric unit, Kevin works
at his laptop next to his sleeping daughter. He chronicles daily events, pours out his personal failings and poses spiritual questions on a Web site devoted to Carli. It has been linked to prayer chains all over the world. Strangers offer solace over the Internet and send cards and small gifts to the hospital.
It’s not that he doubts his heavenly Father. But he wonders why it’s taking so long.
“I hang on to this thing that God is still a God who answers prayers,” says Kevin, who has a master’s degree in ministerial leadership. “I hang on to the belief that ours is a living faith, and it’s not something we’ve
made up; it’s not a pipe dream. Jesus is real. And I’m waiting for him to do some real things.”
He and Edith have always made the medical decisions for their daughter. Now she’s an adult, of legal age to assume that responsibility. They know their daughter is a fighter and wants to live. But they also acknowledge the complications sometimes overwhelm her and affect her mood. She could decide to end the treatment
that keeps her alive.
They aren’t ready to hear that.
“These are hard cases, no question about it,” says Frederick Paola, a medical ethicist and internist in Naples. “At 18, it becomes her call. But a parent could argue her ability to make a rational decision is hindered by depression and make an appeal to overrule her choice.”
Paola says he expects to see more situations like this, with the advances in medical technology.
Only in recent decades have patients such as Carli managed to survive so long.
But then there’s the next issue: quality of life.
“Nobody wants to talk about that, least of all the politicians,” he says. “But when the tab of keeping someone alive
with extraordinary means is being picked up by the government, and less money is available to vaccinate babies and
give women prenatal care, then the tax-paying public may be less supportive. That means the people fighting
against someone’s wishes is a real uphill battle.”
When their world changed The Slacks know their situation is extraordinary.
But before all of this, they were just regular folks, shuttling kids to school events, making sure homework ssignments got done and attending church.
“Priorities were so much different back then,” Kevin says. “Things that mattered so much don’t seem as important
anymore.”
Their world changed in July 2008. Carli cut short a summer vacation in Honduras, where she had been visiting relatives.
Her parents thought she was homesick, but when they greeted her at the airport, she seemed listless and pale. She spent most of the next week in her bedroom, sleeping all day.
That was so unlike their sociable daughter. Suspecting malaria or a virus, they took her to a clinic for tests. But there were no conclusive results. On July 19, they took Carli to the emergency room at St. Joseph’s.
“You’ve got a very sick little girl here,” a nurse told them. Four days later, tests confirmed it: Carli had acute lymphoblastic leukemia.
All things considered, it wasn’t the worst news. The leukemia is a highly curable children’s disease. With chemotherapy, she could be back on her feet in no time. Carli fretted more about losing her long, thick hair than the disease.
No boy would take a bald girl to the prom!
But contracting mucor, as it’s called, just weeks into her treatment, changed everything. The fungus is in the air,
in food, in living spaces. Healthy people with strong immune systems resist it. But people with diseases such as
leukemia and AIDS can’t fight it as well. And it’s often resistant to medications.
For now, the infection seems arrested, but that’s a fragile diagnosis that can change at any time. Besides,
the damage done is catastrophic.
“It would be as if you had a house full of termites, then pest control came out and got rid of them,” Kevin says. “But
now all the wood is dry and brittle and rotted. That’s how Carli’s organs are, that’s how her tissue is.”
Edith won’t let the obvious get her down. She posts encouraging notes and Scriptures on the hospital room walls:
“With men, it is impossible; for with God, all things are possible” (Mark 10:27).
That spirit amazes Tina Callen, whose daughter, Sammy, is a close friend of Carli’s. The two visit regularly.
“As a parent, it absolutely breaks your heart. You realize it could be your child in that bed,” she says. “Truthfully, if I
was in their shoes, I don’t think my faith would be enough to handle this. The strength, unity, hope and love
that the Slacks show teaches me to be so thankful for what I have and to count my blessings.”
Jay Wolfson, the court-appointed monitor in the highly publicized case of Terri Schiavo, whose parents and husband fought a protracted legal battle over whether to let her die, says such situations play out every day in hospitals, rehabilitation centers and nursing homes. Generally, the parents with teens transitioning into adulthood who have traumatic injuries or debilitating diseases agree on how to proceed.
“You’ll never find data on this because it’s usually handled quietly,” he says. “Especially if the decision is to allow
the patient to go in peace. Only when the parties disagree does it become an issue and make intervention necessary.”
Terri Schiavo case
Wolfson says situations involving dying children — even adult children—are heartbreaking for parents. That includes parents with a strong Christian faith who believe in the promise of heaven and being united with Jesus.
Knowing a better place awaits their children doesn’t always mean they’re willing to say goodbye.
On the day Terri Schiavo died, an Orthodox rabbi ran up to Wolfson as he was leaving the Capitol in Tallahassee.
The cleric was agitated, saying he wanted to state his case for putting the brain-damaged woman back on a feeding tube to keep her alive.
“He told me, ‘The scintilla of life creates hope for all life.’ And the very fact she was still alive gives all of us hope,” he recalls.
“Whatever happens with this family, no one can blame them for fighting for every chance. This is a horrifically
tragic situation that fell out of sky on them, and they’re handling it the best way they know how.”
One night last week, after a long day of being prodded and poked, Carli lay in bed, weary and annoyed. She asked for a bedpan and then for some apple juice. She showed little interest in the questions being asked her by a reporter.
And then: Do you want to live? Do you want to keep going on? Slowly, Carli nodded. Very softly, she answered.
“I want to. I want to.”
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SAVING BY THE BOOK
Publication Date:May 23, 2010 Page 1: Section GETAWAY
A Bay area coupon ministry helps cut household spending so savers can give.
By MICHELLE BEARDEN

Kati Kiefer hoists one, two, three, four, five bags of 10-pound kitty litter into her grocery cart at the Publix supermarket. She can't stop grinning.
"You get five bags for $10, on sale," she says, digging into her pocket-size file folder. "That makes it two bucks a bag, which as you may know, that's a deal for kitty litter."
Pause.
"And here I've got coupons for a buck off each!" she says triumphantly, pulling out a bunch neatly stapled together. "That makes it $1 a bag!"
There are people who diligently cut coupons to save here and there. And then there's Kiefer.
Her method has a higher purpose: The more she saves - and the more she helps you save through her website - the more others can be blessed. That extra cash might be given to a charity or someone in need. Same with the surplus products purchased at super low prices. Those extra bags of kitty litter? They may end up at an animal shelter.
Kiefer, 33, is the founder of True Couponing ( It's a departure from the old-school style, in which people carefully clip coupons every week, then file them away and forget them. Kiefer's streamlined system combines social media, spiritual values and free hands-on workshops that she and two friends teach in TampaBay area churches. The True Couponing blog, which is updated several times a day, is drawing up to 400 hits an hour.
"It energizes me," says Kiefer, who whacked her family's monthly bill for groceries, household products and personal care items from $600 to $200. "I love to share a good deal!"
The Valrico mother of four speaks in exclamation marks because every day is an exciting new treasure hunt. Who knows what savings she'll find next?
On the excursion to Publix last week, she came up with a few prizes. Like the two-pack Schick Disposable razors. The store actually owed her money after she ponied up her coupons (that's called an overage). And those Fusion nuts by Fisher? On sale for $1 a bag - and she had $1 off coupons for each. Freebies.